Butterfly Talk
16 episodes - English - Latest episode: about 7 years ago - ★★★★★ - 1 ratingEducation about Epidermolysis Bullosa, support and encouragement, tips and general information regarding advocacy and need for awareness.
Would like to be a guest and talk about your EB experience? Message me!!
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Episodes
Dealing with Anemia with Epidermolysis Bullosa
May 01, 2017 20:30 - 18 minutes - 16.2 MBDealing with Anemia with Epidermolysis Bullosa - A general and personal experience with the Recessive Dystrophic form
Lots of Information about Epidermolysis Bullosa
October 05, 2016 22:00 - 29 minutes - 26 MBLots of Information about Epidermolysis Bullosa from the ebinfoworld.com website
Special Guest Dennis Vannasse Talks about his EB & Special Need Children Books
June 02, 2016 22:00 - 27 minutes - 24.5 MBDennis Vanasse is the author of several children's books, including "Everyone Belongs," which is about a young boy who has Epidermolysis Bullosa. Dennis' passion is working with special needs children. His children's books help children deal with major life obstacles. All of the books promote awareness which leads to acceptance. Dennis is currently the Director of the Student Success Center and an Adjunct Professor at Anna Maria College. In addition, Dennis is a special education department ...
Epidermolysis Bullosa Explained in Layman's Terms
April 20, 2016 21:00 - 24 minutes - 21.7 MBEpidermolysis Bullosa is a rare genetic skin condition-not only it's rare so people in general are not aware of it, the way it manifests itself and how it's inherited is very confusing. In this Podcast I will attempt at explaining EB in the most layman's terms. I did the research for this particular podcast a year ago and published as a blog for reference, that blog is here - >http://blog.silviaskingdom.com/?p=1137 Thank you for listening! Silvia
Special Guest Francesca Tenconi Talks About Camp Wonder & the CSDF
March 31, 2016 20:00 - 28 minutesIn 1996, Francesca Tenconi was diagnosed with Pemphigus Foliaceous, a life-threatening auto-immune based skin disease. She and the other children she met while receiving medical care felt isolated and had no organization focusing on the unique challenges faced by children with such visual diseases. On her 16th birthday in 2000, Tenconi established the Children's Skin Disease Foundation to raise funds for research for the treatment and potential cure of several skin diseases that affect child...
Special Guest Kenny Breaux talks about his son's EB Awareness efforts
February 18, 2016 21:00 - 27 minutes - 24.1 MBKenny Breaux's son Davion has Recessive Dystrophic EB. Davion, AKA, "D-Money," is dancing to a style of music called dubstep he taught himself by watching YouTube videos. But, Davion isn't just dancing for fun, he's raising awareness for EB, or Epidermolysis Bullosa. Kenneth and his son call themselves "Dubsteps Underground, the Mob." Davion has taken his talents to local business and restaurants across East Texas and is auditioning for America's Got Talent later this month.
Special Guest Jodi Champagne Talks about her EB Awareness & Veterans Projects
January 20, 2016 22:00 - 29 minutes - 26.5 MBPhotographer Jodi Champagne lives in Palmdale, California, and her goal is to tell a story, raise awareness, make a difference. She has traveled worldwide to capture humanity with compassion and heart. Her photographs have appeared in National Geographic and Sports Illustrated. Champagne's first book, "Courage Under Wraps," was a day-in-the-life portrait of then-16-year-old Nicholas Zahorcak, who has a rare genetic disorder called recessive dystrophic epidermolysis bullosa where the skin is ...
Frequently Asked Questions about Epidermolysis Bullosa Answered
December 08, 2015 21:00 - 30 minutes - 27.3 MBEpidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. Because of this, there is a lot unknown about the condition and most Doctors are unfamiliar with the condition. I will try to answer some of the most common questions regarding the condition and perhaps clear up some misconceptions. It is estimated that about 10,000 Americans, mostly kids, have some form of EB. Wit...
Special Guest Christie Zink Talks about her EB Awareness & Research Efforts
October 27, 2015 20:00 - 28 minutes - 24.8 MBIn honor of EB Awareness week today we'll be joined by Christie Zink, founder of "I Refuse EB" and her efforts to raise Awareness and funds to find a cure for Epidermolysis Bullosa. irefuseEB.org was launched in 2012 to help raise awareness for EB, promote advocacy and support the research efforts taking place at the University of Minnesota by Dr. Jakub Tolar.
Special Guest Jennifer (Lyric) Bolles talks about Life with EB
September 22, 2015 20:00 - 29 minutes - 25.9 MBAbout Jennifer in her own words: My name is Jennifer (Lyric) Bolles. I was born in FL and have lived in many different states throughout my life. Currently, and indefinitely, I am in Cincinnati, OH. I moved here almost 6 years ago for the EB drs at Cincinnati Children's Hospital and Medical Center's (CCHMC) EB center. My health was drastically suffering as a result of the arrogant, ignorant FL drs who refused to learn about EB I am 42 yrs old and have Recessive Dystrophic Epidermolysis Bull...
Special Guest Jessica Kenley, talks about EB and her books
September 01, 2015 20:00 - 31 minutes - 27.6 MBJessica Kenley was born in 1981 in Buffalo, NY. She lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She is a licensed veterinary technician and has since had 3 healthy children. She wrote the book "Kidowed" to describe the struggles, sorrows, and triumphs of her first two children's painful and short lives. In her second book, "Walking the Mile", she attempts to resume her life with a new husband, a new t...
Raising Epidermolysis Bullosa Awareness with my book Butterfly Child
July 23, 2015 20:30 - 26 minutes - 23.2 MBThe Host of the Podcast Silvia Corradin talks about her book "Butterfly Child: A Mother's Journey", her other books, websites etc. Just before her 30th Birthday, Silvia found out she was pregnant with her first baby, which was stillborn at full term on March 1, 1995. After a miscarriage she had Nicky, diagnosed shortly after birth with Recessive Dystrophic Epidermolysis Bullosa. Nicky is 18 now and the struggles and pain he's been through are immense. Does she dare hope for a future for him?...
Special Guest Derra Nicole Sabo, talks about having EB and her books
June 15, 2015 20:00 - 27 minutes - 24.3 MBSpecial guest Derra Nicole Sabo is 30 years old and lives in Apple Valley, California. She was diagnosed at birth with Recessive Dystrophic Epidermolysis Bullosa. She loves to write and has published a few books about her life. Join us as she talks about her life, living with EB! In her own words: "I may have bandages on my legs and occasionally on my arms, my hands may look like fists and it may take an extra dose of creativity when accomplishing certain tasks, but I wouldn’t trade my lif...
Special Guest Heather Fullmer, talks about being an EB mom & the EBRP
May 26, 2015 20:00 - 23 minutes - 20.6 MBSpecial Guest Heather Fullmer talks to us today about being an EB mom and shares about what it means to her to be one of the founders of the EB Research Partnership. http://ebresearch.org/
Special Guest Lorraine Montello, talks about being an EB mom & Montello Foods
April 21, 2015 22:30 - 30 minutes - 26.6 MBSpecial Guest Lorraine Montello talks to us today about being an EB mom and shares details about her business venture, Montello Fine Foods, which she started with her son Garrett. https://www.montellooliveoil.com/
What is Butterfly Talk?
March 25, 2015 05:00 - 15 minutes - 13.1 MBA quick podcast to test the waters, explaining why I decided to start this and what Epidermolysis Bullosa is in general and what my son goes through on a daily basis. My son Nicky has the Recessive Dystrophic form of EB. This blog talk radio podcast will feature guests and will be a permanent part of the ebinfoworld.com website. I start this podcast in conjuction with the upcoming release of my book "Butterfly Child", my journey from the stillbirth of my first son Alex, followed by a miscarri...